Learning Disability and Dementia Meeting the Needs Diana Kerr Centre for Research on Families and Relationships University of Edinburgh

The Good News People with a learning disability, like the rest of us, experience increased longevity.

Soon most people with a learning disability will be aged over forty

The Bad News Despite demographic changes within the population of people with a learning disability our services are not ready.

We must SEE the ageing population if we are going to respond.

Ageing brings with it the illnesses and conditions of older age. One of these is dementia.

Prevalence Rates Down’s Syndrome and Alzheimer’s Disease years 2% years 9.4% years 36.1% years 54.5% ( Prasher 1995) years 3% years 10% 50-59years 40% (Holland 2000)

Progress of the Condition Amongst people with learning disability for reasons other than Down’s syndrome.Much as general population.About 10 years earlier. Amongst people with Down’s syndrome.Often quicker. About years earlier than general population. Between diagnosis and death :- 3-5 years.

Why is an early diagnosis not made? Problem of detection Lack of experience amongst professionals Carers not aware of presenting problems Carers and workers increase prompting Denial Reluctance to seek help

Baseline Assessment From 30 years onwards for people with Down’s syndrome. Later for people with other causes of learning disability.

How does Dementia Affect People? A series of losses Apraxia ( Inability to undertake complex tasks… daily living skills) Agnosia ( Inability to identify objects) Aphasia ( In ability to use and understand words) Roll back memory If you do not know the past of the person with dementia then you do not know them.

Life Story Work..Why, what how? If you do not know the past of the person with dementia then you do not know them Raises staff expectations if there is a move Use boxes and books Enables the understanding of ‘ challenging behaviour.’ Story of George.

This needs to be embedded in a Philosophy of care. What does this need to be?

Philosophy of care Don’t stress the person. Don’t confront. Go with the flow. Forget targets Emphasis maintaining skills Get the right physical environment Keep changes to a minimum Keep noise levels down Maintain nutrition /hydration Simplify communication Know how the person expresses pain..more later

This needs to be embedded in Practice that is Consistent Informed Planned Resourced

What did we want it to do? Be person centred Help understand the principles of dementia care Set a philosophy of care Educate and inform Assist in planning ahead Ensure management support Central place for documentation Signpost for places of support

To get the book:- The Dementia Workbook Karen Dodd, Diana Kerr and Scott Fern Down’s syndrome Association Langdon Down Centre 2a Langdon Park Teddington Middx TW1 9PS Tel no

Where should people be?

‘Home for Good?’ Preparing to Support People With a Learning Disability in Residential Settings When They Develop Dementia Heather Wilkinson, Diana Kerr Colm Cunningham, Catherine Rae

Models of Care ‘Ageing in place’‘Ageing in place’ /Dying in Place,where people remain in their own accommodation with appropriate supports adapted and provided’ ‘In place progression’‘In place progression’ where staff and the environment are continually developed and adapted to become increasingly specialised within the learning disability service( but not necessarily in their own accommodation) ‘Referral out’‘Referral out’ where people are moved to a long- term nursing facility or other type of provision

Lack of Planning by Service Providers to meet the Needs of people with a Learning Disability and Dementia This led to ad hoc arrangements that often failed to meet the needs of people with dementia, co residents and staff. There was a constant need to reapply for funding to meet changing needs. Often by the time the funding came through the needs had changed. Lack of coherent strategies and resources led to people being moved inappropriately to nursing homes for older people. Generally life expectancy and quality of life was dramatically reduced as a consequence

Models of Care Ageing in Place This often is the best option Referral out Can be significantly detrimental In Place Progression This can be the best option if someone has to move

Finally This is a pressing issue. If we do not act now then many of the gains achieved for people with a learning disability over the last twenty years will be lost to those who develop dementia.

‘Home for Good?’Wilkinson, Kerr, Cunningham and Rae Pavilion (2004) or free pdf on:- Down’s Syndrome and Dementia Workbook for Staff. Dodd, Kerr and Fern (2007) Understanding learning Disability and Dementia: Developing Effective Interventions Diana Kerr Jessica Kingsley (2007) In The Know: Implementing Good Practice: Information and Tools for anyone supporting people with a learning disability and dementia. Diana Kerr and Heather Wilkinson (2005)